F.E.A.S.T's Around The Dinner Table forum

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Scaredmom2019
Ugh!!

Going on 10 weeks of PHP at 40 hours a week. Have made great progress on WR. Really close to goal. 

My D has just totally disengaged in treatment. She says she is done and knows all the skills etc. Feels confident with my support and FBT she can continue at home on recovery. She's depressed and wants out of there. 
At this point she is not getting anything more out of it. 

Should I go ahead and just do FBT at home with the agreement that any refusals or backsliding will mean more treatment? It seems she sliding in the last week and I'm worried that shes just had enough and needs to start taking responsiblity (with my 100% supervision) of her eating. I'm really lost on this. I don't see keeping her at PHP longer to helpful at this point. Great weight gain, pretty good about meals at home etc. If we leave I will expect 100% compliance.
What should I do? She is done with that place and has done some really hard work. She says that if I'm supporting and helping with meals she believes she will be able to continue meal plans at home.
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Torie
I think that is ED talking to you.  I would ignore that or possibly assume that whatever ED says, you should do the opposite.

What does the PHP clinic say?  

Is there a step-down option where you can, say, keep her home one afternoon or one day out of 5 and gradually transition to home treatment?

Personally, I would be very leery about easing up when she is "sliding in the last week."

Just my 2 cents as a well-meaning stranger on the Internet.  Others may have different ideas. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
 Really close to goal. 

That is often the hardest stretch - reminds me of transition in childbirth. (Is that what it's called?)  Fasten your seatbelt, put on your oxygen mask, and know that you may see great progress soon (but that it may get even worse in the meantime). 

Hugs! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
It is hard to know which way to go with this. I agree with Torie it may well be her ED that is talking here. You have posted in other threads she is having problems eating, problems with vomiting etc. first. Although some of this may be the result of difficult timing for her program it may also be that her ED is really strong and looking for loopholes. If you are sure that you can maintain 100% meals 100% of the time that would be a case for changing things, why add in things when may be the thing needed is just time. A step down kind of program does seem to me to be a better option too, less therapy, still an expectation of treatment but does allow her a bit more flexibility too.

Oh and yes @Torie it is called transition. Women often say things like I'm going home.
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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Scaredmom2019
I'm thinking the same. I thibk i coukd step her down to the IOP...4 days a week 4-7 versus 40 hours a week. I would still expect 100% supervision at home 

The program did say that they think her ED is less and perhaps mental health now needs to be attended to. Perhaps a DBT program for a step down?

She has/had significant anxiety/OCD prior to ED and with WR it may be time to address that more aggressively.
I don't want to be foolish but I also want to drive the car if you know what I mean.
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Torie
Many FEASTIES speak very highly of DBT if you can find a program that has been certified(?)  No, that is not what it is called, it is the therapist who is certified(?)  Sorry, someone else can tell you where to find out if the person has been through the proper training.  We never managed to find that, but I wish we had pushed harder because it sounds very helpful.

I think DBT is something like 2 hours per session, 2 sessions per week.  So the time commitment is very minimal compared to your d's PHP.  Maybe she could cut back the PHP hours and add the DBT - is that what you are thinking? 

My impression is that there are useful ways to address OCD - I think they have figured that out pretty well.  Anxiety, well, that has been a tough nut in the Torie family and we have not figured that out at all.

I was another one who was terrified at the though of backsliding on meals / weight.  To me, that is the key focus until you start seeing improvements in state.

I wonder if you have tried Tina's idea of marking the days on a calendar - red for terrible; yellow for moderately bad; green for not bad.  Then you have a good visual to see if things are improving.  I don't know about you, but I just couldn't think of tackling anything else until I knew that things were improving with AN.

I would also not accept step down without clear agreement from clinic what would happen in the case of meal refusal - e.g., agreement that you can take her back in for that meal or some other strong back-up plan.

From my vantage point, it seems that PHP has worked well for her.  I hope they will give you good help and support with the transition because transitions are always tricky.  I can tell you are very strong and determined, and I know that ED is able to tell that, too.  That is a huge point in your favor.

You are such a brave warrior mom.  Your d is lucky to have you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
Torie you are a true angel. My cheerleader. I cannot thank you enough. 
All great ideas as usual. And luckily I'm in a very metro area so DBT should be easier to find. I'm actually only 2 miles from a large ED treatment program that people come to from all over (that's where D has been going). It is OK.... but I'm not overly impressed by their very young and inexperienced staff 🙁
Like the calendar idea a lot!!
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ValentinaGermania
Whatever you decide, make clear that if she stops engaging that will mean going back to more treatment and support immediately.
We stopped all other therapy than FBT because it did not help anything here. But that is only our experience and here it worked well. I know a lot of families that only do FBT at home here in Germany. No other therapy needed in their cases too. So this might work, but as always with ED it will be good to give it a try (maybe as the day program if she could have a one week break of it) and to have a plan b and c and d if it does not work.
Keep feeding. There is light at the end of the tunnel.
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Torie
I think this is the "real" DBT:

https://behavioraltech.org/about-us/founded-by-marsha/

Somewhere, there is a "where to find" type link that lists everyone Linehan certified.  My poor d ended up with someone who claimed to be doing DBT, but I'm sure wasn't Linehan certified, and whatever she was doing, she wasn't doing it well.  

Great that you are in a metro area where there is likely at least one choice for this (if it turns out to be the right thing).  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Torie
P.S. This will take you to the Find a Therapist section if you want:
https://behavioraltech.org/resources/find-a-therapist/
-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
Well I stepped her down today. I'm soooo nervous. Now I'll do FBT at home full time instead of partial with her PHP. She just is "done" with programming. She is getting irritated with staff (not like her) and says she hates it there. I think this is a good sign?? 
She knows the expectations moving forward and said she feels ready. She says "mom I promise I'll do my best!". Oh that statement makes me so nervous but I guess it is what I should expect? She is very clear about saying she DOES need the constant support and supervision still...but that she has gotten all she can from PHP. She does say that despite hating it there now, that it has been helpful and she has learned a lot..
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Torie
Fingers crossed for a (relatively) smooth transition for you and your d!

Honestly, at that stage of the game, I just ignored what my d said.  Either I could tell it was ED talking, or I didn't know if it was ED talking or not.  (I never knew for sure it was my real d.)  

From your previous posts. it seems like she is doing really, really well.  I'm a little surprised they would still keep her in PHP with all the good progress you have been reporting.  So I am optimistic that she is ready to step down.

I know you will feed her like a farmhand and watch her like a hawk.  A few bumps in the road are never surprising, but I'm optimistic she'll do great on this next leg of the journey.

Thanks for the update! xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
Oh Torie- as always you bring relief to my weary mind with your words.  Thank you!!

They suggested that she stay in PHP over the holidays for two more weeks as it already is tailored back a couple days for the holidays but they also said they know she has me fully onbaord at home so they were comfortable with my decision. 

Meals have been hard for her lately but we are looking into treatments for the gastroparesis issues. We've been taking Zofran for the nausea and it has been helping. I believe we havent had any vomiting for at least a week now. Phew.
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Scaredmom2019
And now I lay in bed sobbing. Tonight she said "give me the snack or I'm not eating"....well I know! But I saw an angry more hostile side.
She then went on to explain to me that she really doesn't need to eat. That she functioned way better without food. That up to her she would not eat again. 
I'm second guessing taking her out of PHP and I'm sooo tired. 
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sandie
Hi, it sounds like it has been a very emotional day and you do sound exhausted. 
That is just ED talk- transitions can be tricky so probably testing you a bit.
You need to look after yourself so you can stay strong. I had to learn that looking after myself- which is really hard with ED in the house, is not an optional extra. It is an essential component of FBT. Do something nice for yourself - even if for a few minutes- like savour a cup of coffee, allow yourself to enjoy a moment. Sending you a big hug. Xxx
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Torie
Aww, Scaredmom, it is really scary to have ED in the house full time.  I remember waking up with my heart pounding - I was glad I almost never remember my dreams as I obviously did not get away from ED by sleeping.  I bet your real d is is scared as you are - it must be terrifying to share your brain with a monster beast.  Our poor kids.

I think all you can do is take it one day at a time, one meal at a time.  And always remember that we are with you in spirit.

Keep swimming. xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
And now I lay in bed sobbing. Tonight she said "give me the snack or I'm not eating"....well I know! But I saw an angry more hostile side.
She then went on to explain to me that she really doesn't need to eat. That she functioned way better without food. That up to her she would not eat again. 
I'm second guessing taking her out of PHP and I'm sooo tired. 


Try not to show her that you question anything and fake that you are totally convinced it will work and that you expect her to eat.
It is totally normal that ED tests now how strict the boundaries are and if he can get her back to restricting.
Do not give in to her 1000 ideas why she does not need to eat. Try to be a broken record and say "you need to eat that now!" until she eats.
It will get better in the next days when you stay strict and fake a brick wall. Try to get through that phase.
Keep feeding. There is light at the end of the tunnel.
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teecee

I think this is normal testing of you to see how you will respond (hoping that you are made of strong stuff). Fake the confidence if need be but I would still check any rude behaviour by pointing it out and asking where that came from....my D would back down or blow up. If she blew up we always talked about it the following day or whatever to reinforce that we loved her but would not accept it.

Once we said ‘and this is why you may not be well enough to go to uni’....oh my that got a bite back!...over dramatising “oh so you’re stopping me going to uni” reply: “no the ED is doing that...we never said you can’t go just that you have to be well by making good decisions” response...”I do look after myself-I don’t starve myself do I?!!!’” Reply: ‘You exist...that is not looking after yourself and being well’ 
Either way she could listen or ignore...she chose to listen which was good. 

18 year olds demand independence... I know it’s tough for them as they feel they’re being treated like toddlers...our response was to get her to show us he could make good choices. We are hopeful that this time next year she will be ready. 

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mnmomUSA
Part of me is wondering whether you might want to switch to a different provider?  I think you CAN do this at home, but you need the right kind of support for that.  Maybe the PHP program people are not the right people?  Also, I will just say that you are still relatively EARLY days in this process.  It takes a lot of time, and a LOT of food to heal their brains.  My DD wasn't willing to even acknowledge that she had a problem until nearly a year into things.  No lie.  
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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Torie
How is it going, Scaredmom?  Thinking of you. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Scaredmom2019
Thank you for all the kind messages of support..
I feel like shes gotten what she can from her PHP. Her PHP psychiatrist agrees with me though not everyone else does.
Refeeding has gone relatively smoothly overall. However the nausea and involuntary vomiting persists. It has happening more often. She says she feels horribly nauseous almost all the time, regardless of food but obviously food makes it worse. This has made our meal plans more challenging. She is doing about 80% of food and then supplementing the 20% with Ensure. 
She IS telling me when she gets sick. A few times per week. 
She is very frustrated by it and feels that the nausea will never ever go away. It is making her feel a little hopeless and scared. 
On the other side her mood seems more stable and level but this nausea issue is really rough. 
I have a GI appt set up but I think both D and I don't have a ton of faith that there will be a fix to this. 
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MKR
I think seeing the GI is a wise idea, you want to cover all bases, in case it's not all psychological. 
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Scaredmom2019
We have a 5 hour appt next week for a gastroparesis emptying study. She will eat and then every 30 minutes they will look to see where the food is. It will be interesting. I'll let you all know what the results are..
 
Interestingly, tonight we had dinner out. My D had a sushi roll,.some edamame, a small piece of pizza and a few bites of brownie. We went with a friend of hers and my friend. I asked her an hour later who the nausea was and she said: not bad at all, probably because I was distracted 😬
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ValentinaGermania
In that case the nausea can be anxiety and then distraction will help. Did you already try to eat in front of TV? Many of us here ate while watching funny TV shows like 2 and a half men or big bang theory and that helped a) with distraction and b) with speeding up meal times here.
Keep feeding. There is light at the end of the tunnel.
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